Hi all, I've been on this forum for a while as I've been testing and getting opposing DX for a year now. I thought I would put my story down as it might be helpful to someone.
I started getting symptoms of Irritable bowel in my early 20's...I was on a carrot crave phase and we figured it was too much roughage. As time went by, it subsided but I started getting migraines. My migraine treatment of choice was a a Coca Cola, 2 Excedrins and a chocolate brownie and that often did the trick if I caught it early. (Interesting I ran into some young man recently who told me of his migraine cocktail which was exactly he same!!). During my single days, I often got migraines after alcohol and was told that taking aspirins before going to bed was helpful ...aspirins and alcohol all rolling around in there and resting on the stomach lining during sleep!).
My friends and I went to Palm Desert one weekend and we spent the day laying out poolside, eating from a huge bag of buttered popcorn, sipping on gin tonics. That night, we went to a movie and more popcorn! I even joked about the mountain of popcorn I ate that day! That night I was in hell. Terrible pain and had to be admitting to a hospital. They kept me a few days, hydrated me, symptoms went away and they discharged me with no DX. No more issues for 10 years.
Roughly 10 years later, my annual exam picked up fecal blood and I was scoped for the first time. Ulcers in stomach treated with medication. Ordered to stay off aspirins, given a tylenol migraine product and put on Prilosec for 7 years. During this period, chronic diarrhea and eventually another annual exam showed issues with nutrients - calcium, iron, B12, etc. I was pretty sure that a fat girl could get lots of nutrients so I blamed absorption issues on the Prilosec and went off it. Diarrhea stopped. Chronic constipation began sometimes to the point of impaction.
About 5 years later, the blockages started with stomach pain after eating. Several ER visits no DX. Generally hydration with IV resolved it. I learned to drink lots of water especially when having an issue. During this period, my rosacea kicked up and I was put on antibiotic therapy off and on for years.
I was living with pain at night after dinner time but managed to keep the major issues away with my water drinking. However, I went to a GI and was tested with a camera pill which showed "nasty ulcers" in the small bowel. The camera pill was "stuck" for 6 weeks and eventually ejected following medication for HIDA scan. My doctor immediately wanted to start Humira. I was freaked out by the side effects and asked so many qustions, I was referred to their "Humira expert" who looked at my reports and said you do not have Crohns. He cancelled the Humira order and ordered more testing, including a "Crohns test" which GI #1 did not request. All markers came back negative. I was put on Align probiotics, Myralex and started a full vitamin regime as well as B12 shots. I felt amazing.
Shortly after, had a blockage that I could not clear. Many tests resulting in surgery for strictures where an "insignificant amount of bowel" was removed.
The surgery was done laparscopically and I had a mild recovery. It was amazing. And I feel great.
Meanwhile, my surgeon recommended GI#3 since my GI#2 was a no show during this horrendous period, sent another doctor who asked me what my story was. Useless. GI#3 put me on steroids for 3 months, I gained 30 lbs, and later she ordered Prometheus whch came back positive.
I return to the doctor on May 13. Meanwhile, I woke up with a virus that made every joint in my body ache horribly and it lasted 2 days. Since then, my joints are ALL achey and sore. I'm thinking from the weight gain - which was 30 lbs and horrendous. However, my mother has RA and woke up one day after taking some new medicine for something else, and could not get out of bed due to her joints - she was around 65. She was told this is how RA works sometimes - just appears one day. I am 63. My brother has diverticulis and vitiligo skin issues. My daughter has ichthiosis skin issue as do I on my lower legs.
I have been adamant that this is not IBD due to my history and all the aforementioned issues. Now I am wondering if this is not one of the 3's that they say come with IBD...bowel issues, skin issues, joint issues.
My digestive issues other than some GERD are excellent - I have normal BMs and no pain. I have no issues with foods.
I am standing at a point where I don't know if I need the medicine at this time and I'm not sure in my heart I have this disease. I will update as time goes by but I would be very interested in feedback from other members with similar history.
Thanks for listening to my story.
I started getting symptoms of Irritable bowel in my early 20's...I was on a carrot crave phase and we figured it was too much roughage. As time went by, it subsided but I started getting migraines. My migraine treatment of choice was a a Coca Cola, 2 Excedrins and a chocolate brownie and that often did the trick if I caught it early. (Interesting I ran into some young man recently who told me of his migraine cocktail which was exactly he same!!). During my single days, I often got migraines after alcohol and was told that taking aspirins before going to bed was helpful ...aspirins and alcohol all rolling around in there and resting on the stomach lining during sleep!).
My friends and I went to Palm Desert one weekend and we spent the day laying out poolside, eating from a huge bag of buttered popcorn, sipping on gin tonics. That night, we went to a movie and more popcorn! I even joked about the mountain of popcorn I ate that day! That night I was in hell. Terrible pain and had to be admitting to a hospital. They kept me a few days, hydrated me, symptoms went away and they discharged me with no DX. No more issues for 10 years.
Roughly 10 years later, my annual exam picked up fecal blood and I was scoped for the first time. Ulcers in stomach treated with medication. Ordered to stay off aspirins, given a tylenol migraine product and put on Prilosec for 7 years. During this period, chronic diarrhea and eventually another annual exam showed issues with nutrients - calcium, iron, B12, etc. I was pretty sure that a fat girl could get lots of nutrients so I blamed absorption issues on the Prilosec and went off it. Diarrhea stopped. Chronic constipation began sometimes to the point of impaction.
About 5 years later, the blockages started with stomach pain after eating. Several ER visits no DX. Generally hydration with IV resolved it. I learned to drink lots of water especially when having an issue. During this period, my rosacea kicked up and I was put on antibiotic therapy off and on for years.
I was living with pain at night after dinner time but managed to keep the major issues away with my water drinking. However, I went to a GI and was tested with a camera pill which showed "nasty ulcers" in the small bowel. The camera pill was "stuck" for 6 weeks and eventually ejected following medication for HIDA scan. My doctor immediately wanted to start Humira. I was freaked out by the side effects and asked so many qustions, I was referred to their "Humira expert" who looked at my reports and said you do not have Crohns. He cancelled the Humira order and ordered more testing, including a "Crohns test" which GI #1 did not request. All markers came back negative. I was put on Align probiotics, Myralex and started a full vitamin regime as well as B12 shots. I felt amazing.
Shortly after, had a blockage that I could not clear. Many tests resulting in surgery for strictures where an "insignificant amount of bowel" was removed.
The surgery was done laparscopically and I had a mild recovery. It was amazing. And I feel great.
Meanwhile, my surgeon recommended GI#3 since my GI#2 was a no show during this horrendous period, sent another doctor who asked me what my story was. Useless. GI#3 put me on steroids for 3 months, I gained 30 lbs, and later she ordered Prometheus whch came back positive.
I return to the doctor on May 13. Meanwhile, I woke up with a virus that made every joint in my body ache horribly and it lasted 2 days. Since then, my joints are ALL achey and sore. I'm thinking from the weight gain - which was 30 lbs and horrendous. However, my mother has RA and woke up one day after taking some new medicine for something else, and could not get out of bed due to her joints - she was around 65. She was told this is how RA works sometimes - just appears one day. I am 63. My brother has diverticulis and vitiligo skin issues. My daughter has ichthiosis skin issue as do I on my lower legs.
I have been adamant that this is not IBD due to my history and all the aforementioned issues. Now I am wondering if this is not one of the 3's that they say come with IBD...bowel issues, skin issues, joint issues.
My digestive issues other than some GERD are excellent - I have normal BMs and no pain. I have no issues with foods.
I am standing at a point where I don't know if I need the medicine at this time and I'm not sure in my heart I have this disease. I will update as time goes by but I would be very interested in feedback from other members with similar history.
Thanks for listening to my story.
I find it very informing to read stories of other people's experiences as I'm not long diagnosed and still getting used to this condition. From what I am learning it does seem that it can take a long time to get a definitive diagnosis....and some remain undiagnosed. I'm sorry that you are getting all these conflicting opinions as it certainly makes for a very confusing and frustrating life. You definitely have had your fair share of troubles in your life, more than is fair. I hope that you get some answers to your difficulties and can finally resolve your issues. I wish you the very best luck and health, take care.